Elderly face 'institutional ageism' says Paul Burstow

From the Telegraph, 26 February 2012

          By John Bingham, Social Affairs Editor

Paul Burstow promised to introduce a national standard of training for care workers after a coalition of politicians, charities and unions warned that elderly people were too often being treated as “objects”.

Mr Burstow was speaking at the launch of a code of conduct for care workers and nurses which calls for patients to be treated with dignity and respect.

Politicians on both sides of the Commons, the Royal College of Nursing, the TUC, and charities including Age UK are among supporters of the Dignity Code drawn up by the National Pensioners’ Convention.

It calls on nurses and carers to obtain consent for treatments and it demands that elderly people are allowed to “speak for themselves” either directly or, in cases where this is no longer possible, through a friend or relation. It also requires carers to address older people formally rather than by their first name, unless they are invited to do otherwise. Supporters hope the new code will be written into their contracts.

Speaking at the launch in the Commons last night, Mr Burstow said the document would be a “starting point” for a legally enforceable code of conduct for the care sector.

He said: “We have to make sure there are clear training standards for our health care assistants, our care assistants. There are none at the moment.

“And we have to make sure that there is a clear code of conduct for how they should behave.

“We have to challenge institutional ageism in our health care system and our social care system.”

Earlier, the Care Quality Commission (CQC), the care regulator, said that inspectors will be sent into care homes to check whether basic standards are being maintained.

A similar programme of inspections in the National Health Service last year found that almost half of hospitals were failing to feed elderly patients properly and dignity was lacking in care at 40 per cent.

Dame Jo Williams, chairman of the CQC, said: “The CQC cannot stress enough the importance of respecting and involving people who use services and the critical issues around safeguarding.

“Our NHS Dignity and Nutrition Inspection Programme looked specifically at whether the essential standards of dignity and nutrition were being met on wards caring for older people and we will be launching an inspection programme looking at the same issues in social care shortly.”

Speaking in London tomorrow Liz Kendall, Mr Burstow’s Labour shadow, will call for a shift in the care service with more people being treated in the community rather than hospitals. “Fewer older people are getting the care they need,” she will say. “More are ending up having to go into hospital, or getting stuck in hospital or more expensive residential care when they don’t need to.”

10 early signs of Parkinsons that doctors often miss

A helpful article dealing with the early indicators for Parkinsons Disease

By Melanie Haiken, Caring.com senior editor

Let's be honest: A diagnosis of Parkinson's disease can be pretty unnerving. In fact, an April 2011 survey by the National Parkinson's Foundation revealed that people will avoid visiting the doctor to discuss Parkinson's even when experiencing worrisome symptoms, such as a tremor.

The problem, however, is that waiting prevents you from beginning treatment that -- although it can't cure Parkinson's -- can buy you time. "We now have medications with the potential to slow progression of the disease, and you want to get those on board as soon as possible," says Illinois neurologist Michael Rezak, M.D., who directs the American Parkinson's Disease Association National Young Onset Center.

Parkinson's disease (PD) occurs when nerve cells in the brain that produce the neurotransmitter dopamine begin to die off. When early signs go unnoticed, people don't discover they have Parkinson's until the disease has progressed. "By the time you experience the main symptoms of Parkinson's, such as tremor and stiffness, you've already lost 40 to 50 percent of your dopamine-producing neurons. Starting medication early allows you to preserve the greatest possible number of them," Rezak explains.

Here, 10 often-missed signs that can help you identify and get early treatment for Parkinson's.

1. Loss of sense of smell

This is one of the oddest, least-known, and often earliest signs of Parkinson's disease, but it almost always goes unrecognized until later. "Patients say they were at a party and everyone was remarking on how strong a woman's perfume was, and they couldn't smell it," says Rezak.

Along with loss of smell may come loss of taste, because the two senses overlap so much. "Patients notice that their favorite foods don't taste right," Rezak says.

Dopamine is a chemical messenger that carries signals between the brain and muscles and nerves throughout the body. As dopamine-producing cells die off, the sense of smell becomes impaired, and messages such as odor cues don't get through. Some researchers consider this change so revealing that they're working to develop a screening test for smell function.

2. Trouble sleeping

Neurologists stay on the alert for a sleep condition known as rapid eye-movement behavior disorder (RBD), in which people essentially act out their dreams during REM sleep, the deepest stage of sleep. People with RBD may shout, kick, or grind their teeth. They may even attack their bed partners. As many as 40 percent of people who have RBD eventually develop Parkinson's, Rezak says, often as much as ten years later, making this a warning sign worth taking seriously.

Two other sleep problems commonly associated with Parkinson's are restless leg syndrome (a tingling or prickling sensation in the legs and the feeling that you have to move them) and sleep apnea (the sudden momentary halt of breathing during sleep). Not all patients with these conditions have Parkinson's, of course, but a significant number of Parkinson's patients -- up to 40 percent in the case of sleep apnea -- have these conditions. So they can provide a tip-off to be alert for other signs and symptoms.

3. Constipation and other bowel and bladder problems

One of the most common early signs of Parkinson's -- and most overlooked, since there are many possible causes -- is constipation and gas. This results because Parkinson's can affect the autonomic nervous system, which regulates the activity of smooth muscles such as those that work the bowels and bladder. Both bowel and bladder can become less sensitive and efficient, slowing down the entire digestive process.

One way to recognize the difference between ordinary constipation and constipation caused by Parkinson's is that the latter is often accompanied by a feeling of fullness, even after eating very little, and it can last over a long period of time. When the urinary tract is affected, some people have trouble urinating while others begin having episodes of incontinence. The medications used to treat Parkinson's are effective for this and other symptoms.

4. Lack of facial expression

Loss of dopamine can affect the facial muscles, making them stiff and slow and resulting in a characteristic lack of expression. "Some people refer to it as 'stone face' or 'poker face,'" says neurologist Pam Santamaria, a Parkinson's expert at the Nebraska Medical Center in Omaha. "But it's really more like a flattening -- the face isn't expressing the emotions the person's feeling."

The term "Parkinson's mask" is used to describe the extreme form of this condition, but that doesn't come until later. As an early symptom, the changes are subtle: It's easiest to recognize by a slowness to smile or frown, or staring off into the distance, Santamaria says. Another sign is less frequent blinking.

5. Persistent neck pain

This sign is particularly common in women, who have reported it as the third most-common warning sign they noticed (after tremor and stiffness) in surveys about how they first became aware of the disease.

Parkinson's-related neck pain differs from common neck pain mainly in that it persists, unlike a pulled muscle or cramp, which should go away after a day or two. In some people, this symptom shows up less as pain and more as numbness and tingling. Or it might feel like an achiness or discomfort that reaches down the shoulder and arm and leads to frequent attempts to stretch the neck.

6. Slow, cramped handwriting

One of the symptoms of Parkinson's, known as bradykinesia, is the slowing down and loss of spontaneous and routine movement. Handwriting is one of the most common places bradykinesia shows up. Writing begins to become slower and more labored, and it often looks smaller and tighter than before. "Sometimes a family member will notice that someone's handwriting is becoming very spidery and hard to read," Santamaria says.

Washing and dressing are other areas where bradykinesia appears. Someone may take a long time to get dressed or be unable to deal with zippers and other fasteners.

7. Changes in voice and speech

As the brain signals and muscles that control speech are affected by Parkinson's, a person's voice begins to change, often becoming much softer and more monotone. This is frequently one of the first early signs of Parkinson's that family and friends notice, often long before the patient becomes aware of it.

Slurring words is also characteristic of Parkinson's, because as the facial muscles stiffen, it becomes harder to enunciate clearly. "Some patients begin to have trouble opening their mouths as wide, making speech harder to hear and understand," says Rezak. This subtle sign is so characteristic of Parkinson's that researchers are working on a voice analysis technique that might eventually be used as an early screening and diagnostic tool.

8. Arm doesn't swing freely

"Reduced arm swing" is how doctors describe this symptom, but that doesn't fully capture what some Parkinson's patients first remember noticing. Instead, think of this sign as a subtle stiffness and reduced range of motion: reaching for a vase on the highest shelf or stretching out to return a serve in tennis and noticing the arm won't extend as far.

"With the onset of Parkinson's, people begin to have what we call increased tone, which means the muscles are stiffer and more limited," says Santamaria. "The arm just won't go where the brain tells it to go." Some people first notice this when walking, as one arm swings less than the other. One way to distinguish this symptom from arthritis or injury: The joints are unaffected and there's no pain.

9. Excessive sweating

When Parkinson's affects the autonomic nervous system, it loses its ability to regulate the body, which can cause to changes in the skin and sweat glands. Some people find themselves sweating uncontrollably when there's no apparent reason, such as heat or anxiety. For a woman, these attacks may feel much like the hot flashes of menopause. The official term for this symptom is hyperhidrosis.

This condition can also show up in the form of excessively oily skin or an oily scalp resulting in dandruff. Many Parkinson's sufferers also notice a problem with excessive saliva, but this is actually caused by difficulty swallowing rather than producing more saliva.

10. Changes in mood and personality

Experts aren't certain why, but there are a variety of related personality changes that come with Parkinson's, including pronounced anxiety in new situations, social withdrawal, and depression. Several studies show that depression, in someone who hadn't previously experienced it, was the first sign many Parkinson's patients and their families noticed, but at the time they weren't able to attribute it to Parkinson's.

Some people also experience subtle changes in their thinking abilities, particularly in concentration and the so-called "executive functions" that govern planning and executing tasks. The first sign of decline is loss of ability to multitask. "People who used to be able to do three or four things at once perfectly well find that they have to do one thing at a time or they can't keep it all straight," Rezak says. Some experts believe that thinking problems and mood issues go hand in hand -- that the sense of slipping mentally leads to anxiety, feeling overwhelmed, and social withdrawal.

Care for elderly 'let down by fragmented system'

By Jane DreaperHealth correspondent, BBC News

The Commons health select committee wants local areas in England to deliver "joined-up" care, health and housing.

Funding pressures were reducing older people's quality of life, MPs added.

The government said "urgent reform of the care and support system is needed", and that it was creating the conditions for more integration.

The committee's report said that the Health and Social Care Bill - currently making its way through Parliament - would not simplify a fragmented system in England.

Rather than the current system of multiple funding sources, the MPs are calling for a single local body with the power to commission health, support services and housing.

The precise model would depend on local circumstances, they suggest.

The committee says in its report: "Despite repeated attempts to 'bridge' the gap between the NHS and social care... little by way of integration has been achieved over a 40-year period.

"These separate systems are inefficient and lead to poorer outcomes for older people."

Funding gap denied

Evidence was cited in the report that services which worked together to help keep older people well could potentially save the NHS £2.65 for every £1 spent by, for example, avoiding emergency admissions to hospital.

The committee visited projects which had successfully integrated care in Torbay, Devon, and Blackburn, Lancashire. However, the report points out that the care trusts that had pioneered integration in these areas are due to lose their commissioning functions under the controversial Health and Social Care Bill.

The MPs acknowledged that the government was putting extra money into social care in England - but said they had still received a "weight of evidence" which pointed to funding pressures and service cuts.

The government's commitment of an extra £2bn a year for social care by 2014/15 was "not sufficient to maintain adequate levels of service quality and efficiency", the report claimed.

In a hearing with the committee, Health Minister Paul Burstow denied there was any gap in social care funding.

'Efficiency challenge'

The Conservative MP and former Health Secretary, Stephen Dorrell, who chairs the committee, said: "This government, like its predecessors going back to the 1960s, has stressed the importance it attaches to joined-up services.

"Growing demand, coupled with an unprecedented efficiency challenge, makes it more urgent than ever before to convert these fine words into fine deeds.

"It is impossible to deliver high quality or efficient services when the patient is passed like a parcel from one part of the system to another.

"We recommend that the government should place a duty on the new clinical commissioning groups and local councils to create a single commissioning process for older people's services."

Ministers in England are due to publish a White Paper on social care in the coming months.

The committee is calling on the government to implement the findings of the independent Dilnot Commission, which last year recommended a system in which the costs of care for individuals were capped.

MPs warned though that the future of social care should not be "dominated by a debate about the technical details of funding".

They said carers needed more support - but this was too often not identified by staff such as GPs and social workers.

'Disastrous'

The King's Fund think tank estimates that 890,000 people are not receiving the care services they need - a figure which is disputed by ministers.

A senior fellow at the King's Fund, Richard Humphries, said: "Delivering integrated care must assume the same priority over the next decade as reducing waiting times was given over the last.

"The committee is right to stress that a more ambitious approach is needed to achieve this based on co-ordinated commissioning and pooled budgets.

"We think this could go a stage further by moving towards a single assessment of the funding needs of the NHS and social care in future spending reviews."

The shadow care minister, Liz Kendall, said: "Far from focusing on what older people and their families really need, the government has instead wasted 18 months on its disastrous NHS reorganisation.

"As the committee points out, some of the best examples of integrated care have been achieved by Care Trusts, which will be swept away by the government's own Health and Social Care Bill."

Mr Burstow said: "Integrated care should be the norm. That's why we asked the NHS Future Forum to specifically work on this issue. They told us there is no single silver bullet when it comes to integration.

"What we have already done and continue to do is create the legal and financial conditions for more integration."

Elderly struggle to cope

Sarah Cassidy, Independent on 30 January 2012, examines Age UK's 'Care in Crisis' report.

Thousands of elderly people are struggling to cope with everyday tasks at home because a £500m funding shortfall has left them without the care they need, the charity Age UK warns.

Spending on older people's social care in England this year has fallen short of even maintaining the "inadequate" levels of provision in place when the Coalition came to power, a report by the charity argues.

To maintain the same levels of service as in 2010, the report's projections show that the Government needs to spend £7.8bn this year. In fact, councils have only budgeted £7.3bn in the face of cuts in central government funding.

Age UK's analysis, called Care in Crisis 2012, shows that the combined impact of growing demand for services and a £341m reduction in older people's social care budgets this financial year – equivalent to a 4.5 per cent cut – has created the £500m shortfall.

Since 2004, the number of people aged over 85 has risen by more than 250,000. The increasing demand, combined with a fall in real-terms spending, has created a funding crisis.

Age UK projects that, by next year (2012-13) the Government will need to spend £1bn more than this year to stop the situation deteriorating further.

Its report shows that of the two million older people who need care, almost 800,000, nearly 40 per cent, do not receive any formal support. The total hours of care support purchased by local authorities for older people decreased from two million to 1.85 million in 2009-10. Since 2009-10, local authorities have faced funding cuts of 28 per cent over four years.

In 2005, around half of councils provided support to people assessed as having "moderate" care needs, but by 2011 the figure had fallen to 18 per cent.

Michelle Mitchell, charity director of Age UK, said: "Our new figures show a funding gap clearly exists, that it currently stands at £500m, and that it is growing bigger all the time. We need urgent government action now; otherwise the gap will simply get worse. "Behind these figures are real older people struggling to cope without the support they need, compromising their dignity and safety on a daily basis ... it is the support that helps older people get out of bed, feed themselves, have a wash, live a life that is more than just an existence."

Funding for adult social care has become a hugely controversial issue. The Dilnot commission last year concluded that the current system was unfair and unsustainable. It recommended that individuals' lifetime contributions towards their social care costs – which are currently potentially unlimited – should be capped at £35,000 and the means-tested threshold, above which people are liable for their full care costs, should be increased from £23,250 to £100,000.

The Government has promised to publish a White Paper on the issue in the spring. Paul Burstow, the Care Services minister, said: "We agree with Age UK that the social care system is broken and needs to change. The system must become more joined-up with health and more focused on helping people maintain their independence for as long as possible ... We are investing more money in social care. At the spending review, we committed an extra £7.2bn over four years."

'It would have cost the state less to support her in the flat she loved'

Kathleen James, 87, had hoped to spend the rest of her life in the Eastbourne flat she loved. But as her health deteriorated, she began to need help with basic tasks.

Her local council assessed her support needs as being only 32 minutes a day. Two years ago, Mrs James decided she could not continue in her own home. Her son, Martin Baker, 61, said: "It wasn't what we wanted to do but there was no other way."

Now in a care home in Reigate, Mrs James pays her own care home fees but has an NHS nursing care allowance of £472 a month towards her nursing care. Mr Baker says it would have cost much less to support his mother to remain in her flat.

He said: "My mother had to sell her flat to buy an annuity to pay the care home fees and now has almost no money at all.

"She had to part with many of her treasured possessions because there was no room in the home. If she could only have been given the extra help she needed, I am sure she would have been able to stay in the home she loved – and it would have also cost the state much less money."